From
Partners in Care to Partners in Research –Sue Sheridan, Director of Patient
Engagement at PCORI
I have been following the development of PCORI from afar. PCORI is the Patient-Centered Outcomes Research Institute.
What intrigued me was that here was a body focused on supporting consumer priorities for research and had a core criteria of involving consumers as partners in the development of the research questions, on the research team, analysing results and disseminating the findings. This is really good. At HCCA we are involved in some research but see that this is a real area of need.
So, I was really pleased to hear from Sue Sheridan, Director of Patient Engagement at PCORI about their processes, some examples of research projects and what they have learned along the way.
Participation in research is different to participation in
care. We certainly find this and it was really good to hear Sue Sheridan say this right at the start.
What follows are my notes from her talk.
So what is patient engagement in research? Created by the Affordable
Care act and will only fund research where there are patient partners on the
teams, design the questions and with outcomes relevant to patients. Patients
don’t read the Lancet and JAMA show do we share evidence?
COPD patient didn’t follow the instruction on O2 use and so
was re-hospitalised as he didn’t understand the importance of using it, how to
order it. So the research is looking at devloping consumer materials and then measureing if peer intervention improve outcomes.
End of life care and support, John Hopkins. Mother developed
research question, she lost her child and her mother at the same time and
realised that there were discussions that did not happen yet they were
critical. PCORI funded this project.
How can you improve outcomes by tapping into the experience
of people living with these conditions? They are recruiting via facebook and
social media.
Patient and family centred research – policy – evidence based
patient and family centred care – improved outcomes – form a pyramid with the research at the bottom and improved outcomes at the top.
Research has not answered many questions that patient face.
People want to know which treatment is right for them. Patients need information
they can understand and use. PCORI focusses on comparing interventions (eg,
visual assessment with Bilirubin test for jaundice)
Sue Sheridan shared a story yesterday about her experience with her son. Today she spoke about her husband falling through the cracks in his cancer journey. I appreciate her generosity in sharing these stories. When her husband was presented with treatment options for
cancer the neurologist gave them two
options: Gamma knife or cyber knife –but he could not say which was more
effective or which option was best? They do not know what difference. One was
available locally, the other involved travel to California. There was not evidence at the time to indicate which technique had would lead to a better outcome for her husband. So, as she said, they opted for "the cyberknife beacuse the name was cooler". I just googled this and the first thing that came up was gammar knife of cyber knike - what's the difference?
Patient engagement in the design and conduct of research offers a greater likelihood of influencing research to be patient centred,
useful and relevant. It establishes trust and a sense of legitimacy in its
findings. It will lead to successful use and uptake of research results by the
patient community.
We have lived experience and we know what is important to
us. Our data is our currency. Consumer groups are coming together and agreeing
to share their data with researcher to make a difference. And patients have
connection to other people and online communities. Patients can open the world
up to researchers not only for recruitment but also dissemination of results.
Patients contribute lived experience of condition or disease
and we can help to shape questions that are important to patients and outcomes
that are important to us, such as quality of life. Patients focus on patient
centeredness, ethics, safety and urgency.
PCORI have five criteria, three relate to robust science method but the
other two relate to patient centeredness and patient and stakeholder
engagement. PCORI has engagement officers to ensure that the projects are
achieving the milestones for patient centred care and stakeholder engagement.
Authentic and meaningful engagement and doing as much as they can to lead to patient
centred research.
The Rubric: They have delivered a rubric that spells out what patient engagement
looks like. It also identified principles that apply to each aspect: planning
the study, conducting te study, disseminating study results and PCOR engagement
principles. For example in conducting the study: How best to disseminate information
about mental health in the Arkansas delta. They changed the way mental health
was spoken about as this is perceived as something for crazy people. So they
changed it to emotional wellness.
She also spoke about a project in New Mexico – where there are high
rates of substance abuse and PTSD. Peers are delivering a program called
Seeking Safety to the mental health community. And area under-served. One part
of the community is seeing a psychiatrist and others are seeing a peer. So is
it effective? They are comparing the delivery of the same tool.
Co-learning Kelly Young Patient partner with
Rheumatoid Arthritis. Patient are often
experts in their diseases but we are experts in our experience and this is
invaluable to the project. Find a research that wants your input and your
presence. You will both learn each other’s language. there is a blog post on the PCORI blog about this also. Well worth reading.
One of the benefits of PCORI is that they are challenging
deeply held beliefs about expertise. There are really three critical roles that
need to be recognised: Researcher,
Patients and Clinicians: As the rubric is developed there will be more
examples of partnering with patients and also clinicians, as their voice is
needed as well.
They are coming out with a statement on fairly reimbursing
patient partners. This was a message from consumers to flip the funding and not
just provide funding to universities and medical centres.
Pipelines
to proposals PCORI has created a three tiered approach. Tier 1 pipeline. Pipelines
to proposals – fund a patient $15,000 to find a researcher. What are the
outcomes important to patients in rural Wyoming with Parkinson’s disease? Young
woman in Seattle looking at preterm births. Making sure that HIV patients make
their appointments. And there are many projects online that you can read. The
application is 8 pages and uses lay language. It is a nine month project. It
has potential to move into Tier 2 and then Tier 3.
Great work and exciting to watch.
Darlene Cox
@darlenecox
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